Retraction pocket in eardrum and mastoid surgery

[vjg13]

My daughter has a long history of glue ear, 3 sets of grommets etc. Her hearing is ok at the moment but the ENT surgeon has seen this problem with her eardrum which if left untreated could lead to a choleastoma which would destroy the hearing in this ear.

Has anyone any experience of this type of surgery and the recovery afterwards. It will be a partial mastoidectomy and it does sound awful. TIA

hi my dd also has had glue ear since birth, 4 sets of grommets etc - sounds similar to yours.
She also has a retraction pocket on the left eardrum and has done for at least the last 12/18 months.
When I first found out about this I googled and found all the stuff about choleastoma and got really panicked and asked her surgeons what they were going to do about it and they said choleastoma is very rare and usually they only need to operate to clean out the ear where the situation has gone undetected and debris etc been allowed to build up. Our surgeon said that with regular appointments to check the pocket and that there is no debris behind etc they could go for "conservative management" rather than surgery.

Is this not an option in your dd's case or are they saying that she has already got too much infection/debris behind the pocket? Like you say it is quite a drastic step so I wouldn't be rushing to do it unless she actually had developed a choleastoma iyswim.

Sorry, maybe that's not very helpful but would also be interested to hear from anyone who has had this done as dd may well have to go down this route in future.

How old is your dd btw? (DD is 4.)

My daughter has special needs so the ENT surgeon feels it would be difficult to manage in an outpatients setting, he did say that this would be the usual case. She would not lie still enough etc. whilst they cleaned it out.

For my daughter it would mean a general anaesthetic to do this every 6 months or so.

She is 11 and we've asked to have it done in July so she will not miss as much school.

We must have been lucky so far then as dd's pocket has not required any cleaning out as yet - I can't imagine dd staying still for that either tbh.

I hope someone comes along with a bit more experience.
Have they told you how long she will have to be in for/what the usual recovery time is?

If it's any reassurance, for some reason I have a feeling mastoidectomy used to be done much more routinely years ago than it is now. My MIL had one (but we are talking 55 years ago!!) and she said she knew quite a few people of her age who'd had it done.

I hope it all goes well for your dd.

vjg - I see you have posted on Pucca's thread. Does your dd have a cleft palate too?

Some retraction pockets are helpfully self-cleaning apparently so your daughter may be lucky.

It's just an overnight stay in hospital but some packing stays in for about 3 weeks then she would need another operation to remove this. While the packing is in you can't hear in the ear so this would all be better if it's the summer holidays.

She doesn't have a cleft palate. She had some investigations by the cleft palate people because of nasal escape of air during certain speech sounds.

Thanks for your good wishes, this will be her eighth operation and it doesn't get any easier.